Mixed-in with a lot of new research teasers from the upcoming ASCO meetings in Chicago, a number of significant and touching eulogies and several inspirational stories of myeloma warriors like you and me, I thought I would share some thoughts from readers about myeloma philosophy.

I remember it like it was last week.  5:40 PM on April 3rd, 2007.

I have been pushing the point about how important it is to get a second opinion prior to making any major therapy decision pretty hard lately.

I often receive emails with questions from newly diagnosed multiple myeloma patients, their caregivers and/or family members.

I’m excited to announce that this year’s updated edition of my book, Living with Multiple Myeloma, is now available to download on your Nook, Kindle or smart phone.

If you have been reading my blog at all the past few weeks, you already know I have been suffering from a sudden, serious case of peripheral neuropathy (PN).

Rush, rush, rush this morning, as I get ready to head back to McCormick Place for today’s ASCO meetings.

Yesterday I shared how I was celebrating surviving multiple myeloma for 43 months. 43 months was my magic number—the length of time an average multiple myeloma patient lived at the time I was diagnosed in April of 2007.

Here is a link to a helpful, well produced webinar, featuring Nick Tiller and 16+ year multiple myeloma survivor Lt. Frank Cronin, about living with multiple myeloma and the efforts of the MMRF to cure this disease.

Here is a research abstract I found on the OncologyStat.com site, confirming how using chord blood can be a good allogeneic stem cell transplant alternative:
Allogeneic Hematopoietic Cell Transplantation for Hematological Malignancy: Relative Risks and Benefits of Double Umbilical Cord Blood

Blood. 2010 Aug 4;[Epub Ahead of Print], CG Brunstein, JA Gutman, DJ Weisdorf, AE Woolfrey, TE Defor, TA Gooley, MR Verneris, FR Appelbaum, JE Wagner, C Delaney

ABSTRACT

Effectiveness of double umbilical cord blood (dUCB) grafts relative to conventional marrow and mobilized peripheral blood from related and unrelated donors has yet to be established. We studied 536 patients at the Fred Hutchinson Cancer Research Center and University of Minnesota with malignant disease who underwent transplant with an HLA matched related donor (MRD, n=204), HLA allele matched or 1-antigen mismatched unrelated adult donor (MUD, n=152; MMUD, n=52) or 4-6/6 HLA matched dUCB (n=128) graft after myeloablative conditioning. Leukemia-free survival (LFS) at 5 years was similar for each donor type (dUCB 51% [95%CI, 41-59%]; MRD 33% [95%CI, 26-41%]; MUD 48% [40-56%]; MMUD 38% [95%CI, 25-51%]). The risk of relapse was lower in recipients of dUCB (15%, 95%CI, 9-22%) compared to MRD (43%, 95%CI, 35-52%), MUD (37%, 95%CI, 29-46%) and MMUD (35%, 95%CI, 21-48%), yet non-relapse (NRM) was higher for dUCB (34%, 95%CI, 25-42%); MRD (24% (95%CI, 17-39%) and MUD (14%, 95%CI, 9-20%). We conclude that LFS after dUCB transplantation is comparable to that observed after MRD and MUD transplantation. For patients without an available HLA matched donor, the use of two partially HLA matched UCB units is a suitable alternative.

Here is a comprehensive resource for multiple myeloma related info sites:
Multiple Myeloma Resources in Oncology.

When I set out to write my first book, Living with Multiple Myeloma, I pledged to update it each and every year as long as my health would allow. 

As part of the continuing series about inspirational multiple myeloma patients, I would like to introduce you to Nick van Dyk from Los Angeles. 

The past two days I have shared my admiration for two very special multiple myeloma survivors I know from Minnesota.  Today I would like to write about a third.  Minnesota Don, as he is called, writes an exceptional weekly blog.  Don is part of a research study featuring pomalidomide.  Pomalidomide is a newer, hopefully improved version of Revlimid.  The study is being run by myeloma docs at the Mayo Clinic. All reports are this drug is working well—both for Don and most others in the study.

I passed an important milestone this weekend: Pattie and I celebrated (is that what you call it?) the third anniversary of my multiple myeloma diagnosis. Several new myeloma drugs have been approved since my diagnosis, and median life expectancies have almost doubled. Still, three years seems like a big deal to me—especially since I was told I probably only had three or four years to live when I was first diagnosed.

A reader of my blogs and book had some nutritional questions this past weekend—then asked me about my second book—since it is primarily about nutrition and living a better, more productive life after a cancer diagnosis. My response was brief but full of excuses. Like many of you, there always seems to be something else which needs to get done. I started the book late last spring. I’m about one half of the way through the first draft. I don’t want to rush it—but I am so aware of time as it quickly passes by. I want to finish this second book. My books are my legacy—a way to be remembered—a way to help. I did just recently complete the updated draft for the second edition of my first book, Living with Multiple Myeloma. That goes to the publisher this week.

OK—so my multiple myeloma is back. Short and simple: Now what do I do? When I was first faced with this possibility several months ago, I wrote about how each and every long term mm survivor I had interviewed over the past few years recommended following the same approach—stick with the last treatment that worked as long as you possibly can. Why? Because there is no guarantee the next therapy you try will work as well—if at all. And because squeezing the last few months, weeks or days out of each treatment is how one year turns into two, then three, then five and then ten. To use a military analogy, all myeloma patients are all fighting a delaying action. We are stalling—holding off the enemy for as long as we can until reinforcements arrive.

Yesterday I wrote: “It is from this perspective I will share my anecdotal evidence and observations about the unreliable and inaccurate median life expectancy numbers most multiple myeloma patients face when they are diagnosed today.”

Median life expectancies. I have always been fascinated with this topic. It all goes back to that almost primal moment when you first hear those words: “You have cancer.”

Whenever I send-out a copy of my book, Living with Multiple Myeloma, I include a note encouraging the purchaser to e-mail or call with any questions about myeloma or myeloma therapy. I tell them if I don’t know the answers, I will try and find someone who does! It has been both humbling and gratifying lately as more and more readers from all over the world call or write me with their questions and comments. It always makes my day when I receive a call from a fellow myeloma patient or family member! Please don’t hesitate to leave a comment on either of my blogs–or e-mail me: Pat@HelpWithCancer.Org –or call from anywhere in the United States: 866-336-1696. I am more than happy to help anyway I can!